Alberta

Well, day four of the new year and already something profound and curious has happened.

I began the day awakened by the anguished meowing of my ragdoll.  It was 7:00 am.  I had joked the night before with my husband that we probably didn’t need an alarm clock at this point – Octavia got hungry at approximately the same time every morning.  I feigned sleep as my husband got up to feed her, but instead I found myself having a useless debate on whether or not I should take the four cases of empty beer bottles from last night’s company event to the recycling center.

“Do it,” my adult, responsible side said.  “Otherwise it will sit in the basement forever and  you know what happened when you suddenly had to go to the hospital.”  Of course, no recycling was done while I was away and returnables had piled up.  A couple of co-workers had taken it upon themselves to take care of the returnables.  They had rented a car (neither of them owned one)  and they had told me the amount was about $30, which had paid for the rental.  Which is why to this day I have more sense of urgency to my work tasks – get things done today, because who know what might happen tomorrow?

“It’ll be cold,” the whiny part of my psyche said.  “Who cares if it sits in the basement?  Wait until spring or at least until it’s 40 degrees.”

“Ok,”continued my still developing nicely rationale self.  “See what it’s like outside, then decide.”

This went on in my head until I was close to my building, when my rationale self teamed up with my responsible side and distracted the whiny part of my psyche with an egg McMuffin and together we decided get it done.  I pulled up in front of my building, brought all the bottles down and loaded them into my trunk, then off I went to the dreaded, dirty recycling center.

I hadn’t been there in ages.  My assistant was dealing with the recycling for the moment – perhaps after I had taken her there once and she had experienced the fascist approach to recycling this new crew had established (the previous group being kinder, more marijuana fueled) she was keen to never have to go there again and insisted on taking small amounts of recycling home where plastics didn’t have to be meticulously separated .  It did look like something out of a Mad Max movie. It never looked like the last time I had seen it.  The worn metal receptacles were in a state of constant change, and the only constant was the uneven concrete that was always wet or puddly.  Today I admired a new little office area, constructed out of what appeared to be part of a railway car.  I half expected a little Wall-E garbage robot to putter around the corner, crushing some #5-#7 plastics into a cube.

I had put all the bottles precariously in one of their convenient wobbly shopping carts and was carefully negotiation a path to the glass area, hoping not to pull too hard over a jutting piece of cement and spill my fragile cargo.  I looked to where it had been last time and discovered it had been moved to the furthest part of the warehouse sized space.

I had barely noticed her as she stood there with her own shopping cart full of empty bottles.  Just some old woman, probably a little crazy, hanging out at the recycling center.  She had gold rimmed wire glasses, and wore Salvation Army clothes, a gentle smile adorning her face.

“Do you have any returnables?” she asked me as I labored through the first case of bottles.  I looked up, noticing grey curls peaking out from the sides of her hood.

“No, these aren’t returnable, sorry,” and went on to explain briefly how the market I used to go to didn’t accept this particular brand of Detroit beer.

“Oh, ok.  Thank you anyway.” She went back to standing and smiling, and I went back to dropping bottles carefully into the colored glass bin.

“Those are returnable!” she said suddenly.  I looked at the pale ale bottle in my hand.  “Yeah?  Here, you can have it.” I waited a breath, then, “In fact, feel free to go through the rest of these cases, if you like.  I’ll just get rid of these while you’re doing that.”  I took the cardboard beer cases to the big cardboard compactor bin and threw them in. “No climbing!” a sign said. There were definitely more signs in this fascist regime of a recycling station.

I returned and found she had gone through a lot of the cases in my brief time away.

“I take the money I get and give it to the homeless or donate it to soup kitchens,” she explained, smiling the smile of someone who had found a way to still serve mankind in her old age.  “And I pray for them and anyone that helps me.  So I’ll pray for you, too.”  This part moved me to a different emotional response, one of unexpected gratitude.  A total stranger, praying for me? “Thank you so much for your help today.”

“Oh, thanks.  Everyone needs a little prayer for them, I think.”  I felt a profound connection between us in that moment and I did something I only do under very special circumstances . “What’s your name?” I asked her.

“Alberta, what’s yours?” I told her and we shook hands.

“Do you come here every week?”I continued.  She said yes, Mondays and Wednesdays when it’s open.  I told her I work in an office (“Oh, how nice!”she exclaimed) that always has returnables and I normally just leave them in the nearby parks for homeless people.  I never actually saw someone take one, but they were gone when I walked by later on the way to my parking structure. ” I can bring them here to you whenever I come.”

The look of joy on her face was priceless.  “Whatever you like, but that would be wonderful! Or you can just leave it with them, they know who I am.”

We said our farewells and I returned to work.  As I was driving I pondered this random experience and all the little decisions that brought me to that one point of contact. My heart felt warm and fuzzy, knowing my light had touched another’s over something as simple as returnables.  Suddenly, the recycling place wasn’t so bad after all, and not such an annoyance.

 

Now I’m Here

Not bad, this obscure reference to a Queen song.  Sometimes I start with a title, sometimes I write first.  Lately I haven’t been writing at all.  What’s it been?  Over four months since I last sent something to my copy editor?

Oh, the shame!  I blame life of course, as certain events have made it difficult for me to work on my book or this blog.  Work has gotten busy, my mom was hospitalized twice, I’ve been in a funk with the sudden, shocking deaths of a couple of acquaintances, and music got hectic as well. It did overwhelm me as it seemed to all happen in a short amount of time, and I was helpless in the onslaught.  Why bother, I had pondered.  Is the Universe not going to win in the end anyway?  Why should I try to immortalize myself by sharing a memoir of my life-changing experience?

Despite it all, I am still happy to find myself singing lead again, something I thought I had given up on. Somehow part of my recover included being able to think 3 seconds ahead and remember the next set of lyrics while playing, which is something I used to do fairly competently many years ago.  Quite empowering, to say the least!

I probably should have mentioned this to my neurologist.  I saw her last week for my annual check-up following my yearly MRI (which, by the way, was done at a different place and did NOT offer Pandora and head phones – oh, it was miserable).  She asked me if I’d had any headaches and how my memory was, and I’d said nothing unusual to report.  Although there are gaps in my memory of some events and people I haven’t seen in a long time, but I assumed that was just ordinary memory loss.  Maybe it is, or maybe she accidentally removed memories of a  Christmas party at our friend Ralph’s house, but at any rate there isn’t much she can do about it now, is there?

So this time I skipped the lengthy description of things that are different now.  I decided to accept the little changes in my cognitive perceptions as normal as they can be for someone like me. I mean, my brain looked completely healthy except for that little smudge of leftover tumor, which she suspected might be scarred dura at this point. Sure, why not?  This coming from the same person who thought I might have two tumors just from an initial look at the CT scan.  So much educated guessing, that’s what I’ve decided that doctors do.  Some are actually pretty good at it. I also mentioned the crazy shivers I get in my head from time to time, and after a puzzled pause she said it was probably anxiety.  Oo-kay…

I asked if it was true that after a year, you have to live with whatever deficits you have left.  I’d heard this from a co-worker who had been told that by her neurologist – she had suffered a concussion a few weeks before my incident. “Not true,” my doctor said.  She was thoughtful for a moment. “Any injury to the spine or central nervous system takes up to five years,”she continued,” but in your case I’d say two years is how long you have until full recovery.”  I recalled from before that she was very forthcoming with time-related recovery questions, saying six weeks before I should try playing bass again and four weeks before I could color my hair.  I was very happy to hear this anyway. Then I thought maybe everything I was experiencing lately was in my mind, having seen proof of no further tumor growth.  It did make sense.  Even a friend had suggested that it was me “psyching myself out” when I told him I had issues speaking still.  His response had pissed me off a bit, like many who had responded with “Oh, that happens to me all the time!”* whenever I talked about my deficits, but now I had to rethink my situation.  Perhaps I was remembering what it had been like when I was under the effects of the meningioma crushing my speech centers, and that memory had made me think something was still wrong with me.  Having come to that conclusion, I decided that any issues I was still experiencing were going to be ignored or fought through. If I get anxious under the field of fluorescent lighting on the ceiling of Costco, then I’d stare at the ground until the anxiety passes and keep walking.  If I feel a sudden panic during the end of our evening walks when I see leaf shadows on the sidewalk, I’ll look at a stable object like a house until I normalize as my social worker suggested before.  Piece of cake!

So here I stand, a year and a half later.  And another Queen lyric reference – I’m just full of the clever these days! Well, this gives me hope that I can continue writing my book – ye gods, but writing is hard. Thanks to the friend that mentioned that he hadn’t seen any new blogs lately – just the thing I needed to start up again, I think.

*This is a common experience with those in the TBI club, which is why we suffer quietly and hope no one catches on that we’re not how we used to be.  

 

Leftovers & Epiphanies

So my resources tell me that after a year of recovery, you have to live with what deficits you have left.  Which for me means these things:

1. Occasional problems with speaking, which only happens on my off days.

2. That crazy tickle I get inside my head that I spoke of in a previous blog, which I affectionately call the Shivers.  It hasn’t happened lately, but it always takes me by surprise when it does.

3. Weird Doppler/flange effect in my ears, the sound racing from the right ear to the left.

4. Minor balance issues. I usually have to pause and touch a wall or something solid for reassurance before I turn a corner or go down some stairs.

5. Occasional confusion with sentence structure, either spoken or in emails.

6.  Occasional gaps in memory, long and short-term.

7.  Unsettling anxiety when I enter a Meijer’s or Costco, or sometimes even my office due to the overhead lights.  I adjust after a few minutes, and maybe it will go away eventually.

Again, nothing serious though I’m going to keep an eye on the Shivers and the ear thing.  But at this point I’ve decided to accept these things and deal with them the best I can.  Fortunately,  I have people to help me through this, and after admitting to myself that I needed help, they’re not who I expected them to be. The key was admitting that I needed help in the first place, which was difficult but ultimately rewarding.

I address Item #1

A mentorship program recently began at work, and I decided to participate because I’ve finally decided to take my career seriously and just throw myself into new work -related experiences.  Also, it’s a fine break from the more mundane aspects of my job, and a rare opportunity to focus on myself. I’m worth it,right?

The goals of the mentorship program were left completely up to the mentees, but general guidelines were offered.  Basically I had to come up with what I wanted to get out of it, and I decided that one of my goals was to speak better.  My mentor, who had also experienced a TBI ironically about a month before mine, was well chosen because she of all people there would understand my plight.  I already felt comfortable talking to her, though our paths rarely crossed at work.  Towards the end of our first session, she suggested I think of a group of people I felt safe asking for guidance and support, then email them about it. It was a good plan. I felt hopeful, but then admitted I would find it difficult to ask for this help, for all kinds of reasons.

“Then mention that in the email,”she said.  “Say that it’s hard for you to ask but you’re asking anyway.”  Well, who could say no to that?  They’d have to be soulless zombies to refuse my plea for help.

So I did, reworking a lengthy first draft into something less pathetic and brief.  I literally forced myself to click “Send”, wincing ever so, then awaited their responses.  Some were honored, one person was surprised but all were happy to help me with my problem. Individual meetings as well as unscheduled conversations followed; I had chosen my safe group wisely.  One of many life-changing events that have happened in the last two weeks, but here’s the lesson I learned from this one:  Never be afraid to ask for help.

As for the other items – well, I’ll just deal with them as they happen. If some things get worse then I’ll address them with my neuro, but they’re mostly just bothersome things that remind me of the special club I’m in.  I think family and work have forgotten already, and who can blame them when I appear so normal on the outside?

Meanwhile, I’ve been SO busy I haven’t had time to start the second rough draft of my book!  Between work,music, and family it’s been very hard to find the time to write anything.  This is the first opportunity I’ve had for me time, and believe me, I’m grateful for it.  I’m sure my copy editor (Ooh, I love saying that!) is wondering “Where the hell is that first chapter?  It’s been a month since we met!”  But I have to give myself a break because it is the most I’ve ever written about one subject in my life, and I’ve never actually written a book before.  Writing is hard!  However, I did just see a good article in Quiet Revolution about finding someone to pair up with for accountability, and I messaged my BFF to ask if she wanted to do it.  She has since agreed to, so more work for me to get it going.

And now…more life-changing events!

My mom had a laminectomy recently, and I’ve been taking turns caring for her during her recovery with my older brother and his family.  This has become a new chapter in my adulthood, and it probably happens to everyone at some point of their lives as time continues its relentless march.  It’s very, very hard to see the woman who used to run after me with a slipper in pain or needing to be coaxed through physical therapy.

She’s been recovering in what they call an adult rehabilitation center, where there is much disorganization and many senior citizens in varying stages of old and helpless.  Not as sad as where my grandfather was, but every time I walk past the dining room or accompany her to physical therapy I vow to myself to stay active while I’m youngish and able, and eat smarter.  I want to be one of those 80-year-olds still of sound mind and body, publishing my next book or doing Tai Chi on a mountain top.  It’s not as bad as that scene in Requiem for a Dream where the indifferent aides push food into a barely coherent Ellen Burstyn’s maw, but I always think of that when I glance into rooms on  the way to my mom’s.

My realization that I was entering this new chapter of adulthood was confirmed when I took her to get her staples removed.  She asked the nurse if it would hurt, and the nurse said,”No, it shouldn’t. Not too much.”  I was behind my mom, studying the many tiny staples holding her suture together, and sensed her tensing for incredible discomfort.

“Do you want to hold my hand?” I offered.

Without hesitation she said “Yes!” and I took her hand while the nurse went to work.  As I held it, waiting for a firmer squeeze when the pain would come (it never did), I thought, wow, she never did this for me when I was in similar situations, of which there were many.  What the heck just happened?

A new part of of my story, that’s what.  And you know, it’s not that bad.  In fact, I’m quite enjoying this bonding time that we never really had while I was growing up.  She’s teaching me Tagalog and telling me stories from her life, and we’re talking like adult friends to each other.  Life is just full of unexpected, wonderful things.

 

Anniversary

“The only way to make sense out of change is to plunge into it, move with it, and join the dance.”

Alan W. Watts

I’m quieter inside these days.  Calmer.  Even when I’m stressed, moments later I can talk myself off the ledge.  I have an acute awareness of how small I am, how delicate, particularly my hands. I’ve never perceived them as the fragile constructs of bone and muscle that they are, nor was I ever really aware of my physical boundaries.  I was fearless and strong once, a Viking, and now it seems I’ve become a fragile flower requiring more rest and more planning as I move through life.  Well, maybe not so delicate.  I relearned burpees in bootcamp and ran my first 5K marathon last year, after all.  Not a half marathon like I wanted to do, but not bad.  

I have strategies now, and I use them.  

I’ve found myself solving problems in unexpected ways on occasion, perhaps partly due to meditation, and some of it due to neuroplasticity.  I had read that I’d find myself doing some things a little differently following surgery, and there were indeed some small changes in my behavior.  Not huge personality changes, which would have caused concern, but small imperceptible things unnoticed by friends and family.  But I notice them, in the quiet garden of my mind.  I watched as new flowers grew in areas once trodden on and crushed, and dead spots given new life in different places.

I’m also happy to report I’m in a new music project, which came completely out of the blue.  Somehow I got shanghaied one afternoon by the group that had recruited my husband on drums a couple of months before, and that brief experience was enough to convince me that I was ready to start playing in a band again.  We just had our first proper show, and I actually sang lead on a song I had written in the 90’s.  Though I had a little anxiety about how my mind would respond to being onstage again with its variety of constant environmental changes, I found myself totally in control and relaxed.  Super focused, even.  Ingrained instincts from years of performing came back to me, much like when I had first started driving again.  Like riding a bike, as the saying goes.  

It was May when I was confident enough to get behind a wheel again.  Who knew there was so much involved in driving?  Your hand reaches down to turn the key, your right foot steps on the break while your hand reaches for the gear shift.  You check for oncoming traffic in front and behind me, put the car in drive, put on the brakes to stop at the stop sign, continually survey the scenery, make a right turn, put your  foot on the gas pedal with just enough pressure to keep moving at a steady 20 mph, etc.  Somehow all of this happens automatically in microseconds.   I feared a moment of forgetting like when I was first confronted with the task of putting my contacts in, but thankfully all the stored information was intact and my body knew what to do.

Then there was my inevitable return to public places where there would be people,  movement and noise.  My first venture took place at our local market.  Equipped with my black beanie, big dark sunglasses and earplugs, I had been fine until my husband walked away and left me for a moment  standing near the deli counter.   I became frightened and anxious as my brain struggled with the carts moving past me and people yelling their orders over the counter, or random conversations nearby.  I also felt terribly self-conscious standing there, a strange creature looking like a refugee from Andy Warhol’s Factory. (“Is she trying to be cool or something? What’s with the Foster Grants?”)  I felt like a fragile old woman, afraid to move, staying stock-still until my husband came to rescue me.  He wasn’t gone very long, but long enough for me to grip his arm tightly like a life preserver as we continued with our shopping.   

There was also a company movie outing coming up to see the recently released Avengers: Age of Ultron. I had facilitated the rental of a movie theater back in December and, having already gotten my doctor’s permission to see it,  I was determined to go no matter what.  My best friend drove me, and I entered leaning on her arm as I walked slowly to where our theater was.  I was again equipped for the outside world and hoped my appearance wouldn’t make people feel uncomfortable.

I received a variety of reactions:  Hugs, no hugs, declarations of love, general well wishing and gladness to see I was okay.  But some people were nonchalant or kept their distance.  I saw them looking at me from a distance as if wondering if it was really me.  Perhaps they were. Soon the lights went down and the movie commenced, and we could all escape into the sweet haven of Marvel movie magic and forget about life and brain tumors for a couple of hours..

I kept my sunglasses on and my earplugs in, which was good because there was a LOT of action and fast movement.  And noise, and flashing lights – I should have assumed there would be.  What action movie these days doesn’t have a lot of people zipping around, shooting and spectacular explosions?  There were a few moments when I had to cover my eyes but for the most part I got through the whole movie intact.  Afterwards, when the lights came back on, more people noticed me and more hugs and how have you been’s were exchanged.  It felt good to see everyone, if only briefly and in a dark theater.

A few weeks later, we planned an actual visit to my workplace prior to my return to make sure I could handle it.  Just a half hour, then we would go to the art museum to see the Kahlo/Rivera exhibit.  This was a lot for me in one day, which might have been why I forgot the tickets.  I realized  I had forgotten them halfway to our destination and we didn’t have time to turn around and get them. This was very upsetting – already things were not going according to plan.  How did I not grab the tickets off the table as we were leaving?  I cursed myself for this oversight, then my husband said, “Hello!  Brain surgery!” – which had become our favorite saying every time I was hard on myself.  I calmed down, momentarily forgetting that my triumphant return was all planned. I was supposed to lean dramatically on my husband’s arm while making my way around the two floors, perhaps having rose petals thrown in my path by my co-workers.  A six piece New Orleans brass band would be playing an instrumental version of Praise You by Fatboy Slim and there would be cupcakes for everyone.

Well, there were definitely cupcakes.  

My husband dropped me off while he went back to the house to pick up the tickets, and I went to deal with things alone.  I had brought cupcakes with me, having used the supplies I had bought for cancelled cake jobs.  How excited I was to see everyone! Also I longed to belong in a community again where people needed me.  I’d been alone too long without human contact other than my husband.

People noticed my sudden appearance and soon a happy crowd grew around me (and my cupcakes).  Again, a mixture of reactions:  embraces from people I didn’t expect any physical contact with, a person clearly trying very hard not to cry, and then some people just looked over and smiled and kept working on whatever they were working on.  But I do vaguely remember getting a standing ovation at some point.  It was all very overwhelming and I was starting to get that overstimulated feeling at the top of my head – an odd buzzing sensation that told me I better not overdo it.

I was getting fully assaulted by bright lights overhead, the sense of the high ceiling above me, everyone coming up and saying hello, people moving and chatting.  Someone walked me to the big leather couch to rest and I sat there and did my best at conversing with two co-workers while I waited for my husband. He arrived about 15 minutes later, and then we went to the exhibit. I found myself struggling to stand upright but enjoyed it immensely nonetheless.

Around the same time I had my first venture to a restaurant.  I walked in, again leaning on my best friend’s arm, trying hard to ignore the constant noise of forks hitting plates and the loud clatter of tables getting bussed.  It was very busy for a weekday, and I didn’t expect to see anyone I knew. We were standing at the door waiting for a table when I saw a keyboard player friend of mine. I watched his expression change from quiet recognition to surprise and wonder, which told me he was aware of what had happened to me.  He smiled when we made eye contact, and immediately got up and walked over to hug me.  It was the same flavor of hug that I had gotten from many, the kind that tastes sweetly of gratitude and joy that someone you know and love  is still alive.  He then told me that a mutual friend had told him about my surgery and how great it was to see me up and around.  He asked me what happened, and I gave him a quick summary.

This type of encounter was going to happen fairly frequently in the next few months but would soon wind down, much to my relief.  There’s only so many times you can relate the same story, you know? But I really don’t mind talking about it and answering questions.  You have to catch me at a good time though, when I’m speaking confidently and well.

My medications had been stopped, and my head was clearing.  But my hair hadn’t grown back yet and it was getting too warm to wear my mom’s knit caps.  So, I went into Susan’s Special Needs to get some reasonably priced head coverings.  They had quite a variety of bras, bathing suits, wigs and hats to dress the fashion forward chemotherapy patient or woman of a certain age having hot flashes. Never in a million years did I ever think I would have any reason to go in there, but once I went in I found them very compassionate and helpful.  The saleslady started off with “How long have you been in treatment?”  I took a deep breath and said, “I’ve just had brain surgery and just need something until my hair grows back,” which was still weird to say out loud.  She nodded understanding and directed me to a private room with a mirror and a variety of scarves, turbans and hats, and my husband and I had fun going through some silly ones then settling on a simple style.  I picked a black and a grey version, and after purchasing them we emerged into the hot, sunny afternoon.  I pulled out the grey one and quickly switched it from the pink beanie my mom had knitted for me.

“Well, that wasn’t so bad,” I said, adjusting it in the mirror.  I looked over at my husband. “Does this say cancer patient or does it say hipster?”

“Totally hipster,” he said.  I sighed and looked at myself again.  Well, I can rock this look for awhile, I thought. And so I did, but it did get old once I tired of being the tragic victim of a brain tumor.   It soon lost its novelty and I became annoyed with having to pull something over my head to hide the scar every day.

I have vivid memories still of surrendering to the anesthesia, of time ceasing to exist and swimming in darkness.  Of emerging painfully awake, alone and realizing slowly where I was and what had gotten me there.  I remember immediately envisioning a C major scale on the bass fretboard and planning random things just to make sure I could still do it.  Most of all, I checked if I was still me. But then how would I have known the difference?  I just knew and believed I was whole still, and that I had survived brain surgery to my frontal lobe without any major change in personality.  

People have told me that I’m a badass for getting through this.  They never noticed anything different after I came home and I admit, it does seem like it never happened at times. But at night, I still run my fingers over where the violation happened, where skin and muscle were split apart, where the craniotome cut through my skull to expose the intruder and facilitate its release.  There is the small dent in my head to remind me that it really happened, but only I know it’s there.  I can feel it’s sudden appearance under my fingertips after I massage my forehead then move across to my hairline.  It’s not as shocking anymore. I’ve gotten used to it.  It’s a part of who I am now, and hopefully the last addition to my collection of scars that I’ve accumulated over the years.

I remember good things, too.  Like my husband feeding me slices of Kiku apples drizzled with honey.  The day my cat sensed I was okay again after weeks of laying quietly on the bed, suddenly biting me playfully on the eyebrow like she always did. Or the day my best friend and I came up with the best way to remember “meningioma”.  We decided it sounded slightly Italian and perhaps was the name of an island off the coast of Sicily, known for its delicate eel dishes and rough coastline.  (Say it: Menin-JOH-ma!)

This year has been transforming for me.  I’m not who I was, but have become something more.  I have a better sense of what’s important in life and my role on this big hunk of rock spinning through space. Were it not for this experience, I doubt I would have pursued transcendental meditation or made peace with my family, or finally accepted myself for all my flaws and imperfections.  Were it not for this tumor, I would not be who I am today and more appreciative of what’s important in life.   

I hope you’ve enjoyed reading this blog as much as I enjoyed its therapeutic value and finally flexing my writing muscles for a good cause.  My last name means “teller of stories” in Tagalog after all, and this is my story.  I feel like it’s the one I’ve been waiting to write all my life.  And ain’t life grand?  

Oh, yes.  Yes, it is!

 

 

Mid-April: Memento Mori

So here is one thing I’ve learned:  When you’ve gone through something traumatic like brain surgery, people don’t know how to react.  It messes with their sense of what’s normal, which once included you as a healthy human being untouched by the Horrible Things That Happen to Other People.  Who really expects to wake up one morning and find out their friend or colleague has a baseball sized tumor in their head?  And apparently I had also reminded everyone of their mortality, as a friend had so kindly explained to me.  Oops.

This explained the varying reactions I got from friends and co-workers. People I barely knew visited, and people I thought I knew pretty well did not.  I got hugs from people who normally didn’t hug, and smooches on the cheek from those I had only known in certain music circles. What can I say – people were glad to see me alive. But not a peep or visit from those that I thought would be there for me.

Perhaps they didn’t know how to react once they saw the new me with my mangled head and mild aphasia, or if they should react, what’s the appropriate opening comment? Was it insensitive to say “Wow, it’s like nothing happened!” Or any number of worrisome things that can just paralyze someone from acting at all.  I know these things now and I admit to being guilty in the past of such inaction.  It’s human nature to be uncomfortable around trauma, and to decide that it might be better to not say anything than to commit some kind of grotesque faux pas.

On a positive note, smelling and tasting finally normalized by degrees. One morning I was delighted to find that I could smell coffee, shortly followed by regaining my ability to taste all things sour.

At this point of my hermit existence, I became obsessed with tidiness and order.  I wiled away the hours organizing and tossing all manner of old and unused items, and cleaning the nastiness of months of neglect.   Old medications and hotel room shampoos from the linen closet, stained and battered plasticware from the kitchen and wiping away the thick dust covering my vanity filled my days.  Oh, it was satisfying.  And it gave my life meaning and purpose, something I hungered for while away from work and people.

As scheduled, I visited the speech therapist in the hospital affiliated medical center not too far from me.  This was where all the rehab was for brain trauma, strokes and general physical therapy.  I really hadn’t been out in public places yet so I still had to hang on to things like railings or my husband’s arm when I walked.  The place was one long, wide hallway with different departments on each side, casual seating down the middle and physical therapy patients making their way slowly around the perimeter.  Everyone was moving.  The lights were harsh and the cacophonous murmur of conversation, while not very loud, added to my overstimulated experience.  I was a wreck but I pushed on and we slowly made it to the speech pathology office. I checked in then collapsed into a cushioned chair to wait.

Soon after, a pleasant young woman came out and introduced herself as Melissa, my speech therapist, and she escorted us to her office. It was a smallish room with basic furnishings: a desk with two chairs in front of the door, and a chair in the right corner where my husband went to sit.  I sat with Melissa at her desk.

“Well, we’ve been through a little something, haven’t we?” she began.  We all laughed awkwardly.

“So I’m here to evaluate your speech and cognitive skills,”she continued.  “I’ll give you a few tests to figure out where you are now and if you need any further help. Did you have any concerns or questions before we get started?”

The only thing I wondered about was my smelling and tasting issues.  She said it’s likely that my olfactory area on my left side was bruised or stretched during the surgery, and anytime that happens the injured area needs time to recover.  I hadn’t been prepared for her matter-of-fact way of answering – I was expecting a little more concern in her tone but I assumed she’d had to deal with worse.  Well, that was it for my questions.  I mentally put my big girl pants on for whatever was to follow.

She put me through some memory tests first, first telling me a story and asking me questions after – your usual comprehension and information retention scenario.  I did pretty well, though she did have to repeat the story twice and a few questions I couldn’t answer without prompts.  Then on to basic math, which made me and my husband laugh because I had always been unable to do simple addition or subtraction quickly before any of this had happened.  But all in all, I didn’t do too badly.  She asked if I wanted to come back for therapy or work with some online stuff she would recommend.  I decided to opt out of therapy, as my husband would have had to take me there once a week and it was high time he got back to his life.  So she recommended Lumosity and an app called Elevate to help me improve my speech and cognitive skills.  

Before we left, I asked if she had any information on the brain and what areas controlled certain functions, as I had become curious about such matters.  “Yes, I think I have just the thing you’re looking for. ” She stepped out of her office for a few minutes, then returned with a colorful brochure illustrating major areas of the brain with basic information on what they controlled.  I was elated.  This was the start of my obsession to learn all I could about every aspect of what I’d been through.

Some interesting physiological things happened that day.  First, my menstrual cycle started again,  a little less than two weeks after it had just finished before Easter Sunday.  The second thing was my mind blanked on how to dress for the weather, which was in the mid-30’s at the time.  (Sweater and leather coat? That’s cold, right?) At first I felt nothing as I walked the short distance from our car to the medical building, invincible to the bitter cold.  But when I came out, the chill wind found its way to my skin and I shivered and closed my leather coat tighter, my body remembering just how sucky the mid-30’s can be.

My follow up appointment with my neurosurgeon was the week after.  I arrived armed with about a dozen questions and had also brought a very detailed (possibly obnoxiously so) report on my well-being since we last saw each other. This was part of my new agreement with myself to have a more adult approach to my health, to include coming prepared for doctor appointments and generally taking better care of myself.  I did realize though that there was no way I could have avoided this incident, as they only had unproven theories on the causes of meningiomas.  I doubted that eating more leafy greens and regular exercise would have helped.  ( Though I had at one point decided to go with the mutated chromosome #22 theory, which just sounded more X-Men and maybe I’d get some cool super powers out of this ordeal.)

My doctor answered all my questions with patience and understanding, for example explaining the weird pulsing area in the middle of my scar as merely brain fluid returning, not alien offspring about to break out of my skull.    “Will I get the feeling back here, where it’s numb?” I gestured to where the titanium mesh lay.  “It should,” she said, but added gently, “but it might not.”  Each case was different, was what she meant.  Ok, I can live with that.  Same for when I asked if my hair would grow back.  She said it likely would, but don’t be surprised if it doesn’t.  I asked her to explain the titanium mesh, and she said she had put a double layer but wasn’t able to find a sample of it in her office for me to look at.  “Do I have to wear a helmet or something if I go to a baseball or hockey game?”  Not necessary, was her answer.  It would be as hard as my skull.

Then I asked her about the tumor.

“What did it look like?  If I looked online could I get an accurate physical description of it?”

She looked thoughtful for a moment.  “The thing that surprised me most was how firm it was.  I had to use scissors finally to remove it.”  

“Like how firm?  Like a racquetball?”

“Yes, like a racquetball.  Only harder.” (Eek!)

She advised me to wear sunglasses and earplugs in public places for a while to keep me from being overstimulated.  We discussed my timeline for recovery, driving and going back to work.  She said it had to be gradual, and not to push myself.  It could be another month, but I would know best how I was doing.

We went over my husband’s proposed plan for my gradual return with her approval, and she gave me permission to return to the internet and texting but not to overdo it.  Just an hour a day to start then build it from there, which I was very glad to hear.  At last, research can begin on what the hell happened to me.

She had been in agreement with my oncologist about observing things for six months then doing another MRI.  But before we left, she showed us the image of my brain with the meningioma for the first time.  She and her assistant were probably used to all sorts of reactions when this took place, most likely ranging from suppressed screams to rending of cloth.  I chose rapturous wonder, then quiet horror as I realized I was looking at my brain.  My BRAIN!  Not my lungs, or my kidneys but the very organ that ran the show that was me.  And there was the nasty bit of business, sordidly lounging about like Jabba the Hut in tumor form.  I stared at the wonder of it, the grossness of it as it languished near my skull, unable to grow further as it had been discovered like a cruise ship stowaway.  It creeped me out in an indescribable way, like a passage from an H.P. Lovecraft story.  I was speechless!

“Good thing you didn’t show us this before the surgery,” I heard my husband say, ever the one to speak what I was thinking loudly in my head. “I was freaking out enough.”

I took out my cell phone. “Can I … take pictures?”  I just had to have these images for later reflection.  But certainly not to share on Facebook.  Dear lord, no.

I raised my iPhone up to the screen and took a few shots.  It was, in fact, the size of a baseball – no exaggeration there.  How I didn’t feel that in my head is a complete mystery.  The faint twitterings of hysteria were forming in the back of my reptilian mind only to be calmed down by the more advanced areas of my brain.  “There, there,” I sensed my left prefrontal cortex saying in a soothing voice, possibly like HAL from the movie 2001 Space Odyssey.  It put gentle arms around my trembling amygdala.  “ The big bad meningioma is all gone.  All gone! Now who wants a strawberry milkshake?” Oh, boy.  Milkshake!

Meanwhile, I was definitely losing the calmness and clarity I had been experiencing the first two weeks after the surgery.  The more stimulation I received, the less happy and relaxed I was.  The first indications of post-brain surgery depression were creeping in and I found myself watching Flowers for Algernon and comparing myself to the protagonist, Charlie. The experiment had failed, and I watched Charlie’s grim return to mental retardation after soaring the heights of genius. By the end of the movie he opted  to run away from everything he had accomplished and everyone he had loved, preferring solitude to pity.    

My own mental heaven was dissolving around me and I feared a return to my former emotionally fragile self.  I found myself wondering if this would be my fate as well.  (What?  No super powers? No more Oneness with the Universe?  Why did it have to be this way?  Why??) 

April 15-18: Step by Step

So here we are, mere weeks from the one year mark.  I’m feeling kind of anxious about the whole thing – an odd, uneasy feeling as April 7 gets closer, as the mere mention of Good Friday conjures up a memory of not knowing what the next day was going to bring and being blind-sided.

I just started singing again.  They needed me to sing backing vocals at the church I play for, and once that was over with I offered to do more backing vocals in this new band I’m in.  Yes, that’s right…I’m playing again, too.  It’s probably the most relaxed I’ve ever been, as the lead singer is a famous local poet and professor of English.  And I happen to know he also teaches a class in the performing arts, so of course it’s an encouraging environment.  The songs are easy arrangement-wise, but the challenge is making them sound interesting and focusing on the lyrics, which is are edgy, beatnik beautiful.  Was it destiny that lead me to this point?  Possibly.  But anyway, my voice seems to be back and I’m damn happy about it!

One of the teaching pastors asked me how I was doing with everything, and complimented me on my singing.  I told him I hadn’t sung in a year and a half, and feared that my voice wouldn’t last through the four hour rehearsal and four services.  I didn’t tell him this, but there’s a small lingering thing I’m going through, and I was afraid it would happen at random moments during the songs and draw attention to me.  It happens very briefly – sometimes when I talk, certain vowels trigger a tickle inside my left ear, a shiver that goes deep into my head make me shudder and look like a dog that’s heard something unpleasant. It makes me shudder uncontrollably for a few seconds during which I hope no one notices.  It only happens when I’m in a conversation, so I’ve been keeping my conversation limited with people other than my husband.  I will keep observing this – I suspect it’s some nerves finally waking up after months of inactivity, and nothing more.  

I am hesitant to say anything about my deficits, but during my conversation with the pastor I mentioned I had had trouble with the moving lights when I first returned to playing.  He asked me if there was anything they could do to reduce any future anxiety when I’m scheduled to play, so  I told him  strobe lights might be a problem (yes, they have strobes occasionally there) and he immediately texted one of the stage techs about it.  I told them I hadn’t said anything because I didn’t want to be a bother, but he said please tell them about anything as they wanted to make my experience there as comfortable as possible.  I was glad I said something – better to do that than quietly stress and hope no one notices my occasional inward struggle.  I left there feeling special and appreciated, and not pitied at all.  

I’m at the last few pages of my journal, and I’m discovering that the last few entries were just brief recollections of the day.  So after this one I think I’ll keep things in the present. Maybe I’ll finish by April 7, but no worries if I don’t.  It’s been very busy the last few months and I did just recently get out of a dark hole.  I thought I was going crazy again, having wild mood swings that I endured silently.  I almost went back to my social worker, needing assurance that it was a typical recovery symptom like the internet said and it would pass.  But, I didn’t.  No time, too busy, and I wanted to wait it out.  There are definite changes in my personality, though, I can sense them.  And I accept them.  I’ll never be exactly the person I was before but that doesn’t mean I can’t be better in other ways.

Recently, my sentences in lengthy emails don’t appear to make sense, at least to me.  I will usually end up simplifying the message, or bullet point the ideas so they are clear and lineal.  Not the most interesting way of expressing myself, but no need to get over complicated or clever.  Sometimes I have something witty to say but lack the mental speed to zing it back out there to the hive mind.  Too much effort, I think – don’t I have to get a coffee order in before the end of the day?

And sometimes I look at my name, and there’s still no sense of recognition or connection no matter how long I stare at it.  My doctor told me this happens to everyone. But it scares me, just a little, all the same.

I decided to watch real TV again, or as close as I could get within the strict instructions my doctor had given me.  I thought Bewitched wouldn’t be challenging, what with the fairly predictable plots (usually involving a spell gone horribly awry and trying to hide it from Darin’s boss or the nosy busy-body neighbor lady) so that kept me occupied for a half hour, then decided the Cartoon Network might be more my speed.  I caught Scooby Doo on Zombie Island on another channel and found myself analyzing the huge differences from the choppy animated version I grew up with, where everyone had no distinct relationship and seemed to just be traveling in a colorful van for no reason.  When did Daphne have a career as a news reporter?  And when did she start having a thing for Fred?  This was clearly no longer the innocent depiction of teenagers off on supernatural adventures – this was in the real world of violence and tragic endings.  I quickly went searching for lighter fare, and ended up watching an episode of Doc McStuffins, and learned that Florence Nightingale was a real person who had first started a school for nursing.  Delightful!

Adventure Time had been recommended to me by people who thought I’d really enjoy it, which I did, but there was a LOT going on that I wasn’t prepared for.   The saturated psychadelic colors, the absurd story lines and random unsettling images were a little too much, but I did like the whole stream of consciousness way it was presented.  I found it gorgeously crazy and decided to watch it again in a month when my head was a little more ready for such things.

I had two visitors this week.  The first one was a girlfriend that I’d met at work, and she brought me orange pekoe tea and a bouquet of flowers.  We had just made dinner when she arrived, and I invited her to stay and eat.  During our meal, I attempted to fill her in on what had happened but in the middle of it I became confused as to when certain things took place and became frustrated and had to start over again.  My husband discussed this with me after she left, suggesting that I leave out some details and just get to the action (“I had headaches and hallucinations, I went to emergency, they found a mass on my left frontal lobe, etc.”) .  I followed his advice and was able to more succinctly explain the events to a co-worker who visited that Saturday, one who actually surprised me by asking to see my scar.  Like everyone else who had seen it (which I could count on one hand, and I could barely look at it myself), he said it didn’t look bad at all and marveled at how medicine had become so advanced that I was functioning as well as I was after such an ordeal.  He admitted that he had always been fascinated by psychology and the brain in general, which made me suspicious that he was just visiting me to satisfy his scientific curiosity.  He laughed and said no, he was truly concerned and wanted to see for himself that I was alright.  “Tell people I’m not a drooling vegetable,” I said, and told him to encourage people to come and see me as I was eager to improve my communication skills.  At least at a time – it was still difficult for me to have more than one visitor in the room.

Before he left, I gave him three thank you notes I had written for the founders.  I  thanked the two of them for visiting me before my surgery, and as for the one that couldn’t be there due to business travel I thanked him for his words of encouragement via text that night in emergency.  I had found that while writing these thank you cards (on Snoopy stationery, which I hoped would lighten the mood) my script was very neat and in capital letters, and when I started writing I just kept going on and on and ran out of room eventually, having no idea when or where my thoughts would finally end up.  I’m sure I said some crazy things, but I meant well!

Also had my follow up appointment with the oncologist this week.  I admit it was very unsettling being in the cancer building.  I didn’t belong there and I didn’t want to be a visitor.  Well, who does for that matter – but my tumor had been benign and I was kind of in disbelief that I was actually in this building at all.  But it turned out well.  Not only did they have the best magazine selection of any waiting room I’ve ever been in (Vogue and Harper’s Bizarre!), but my oncologist said the tumor committee had decided I didn’t need any radiation treatment and a six month MRI was the recommended course of action.  He said it with what my husband and I registered as almost disbelief – apparently they had assumed it would be cancerous, despite my neurosurgeon’s firm belief that it wasn’t.  I decided I’d take the better news between the two of them, and besides, the tumor council had spoken.  MRI in six months it was.

When we got home, I dictated an update to my husband who posted it on my Facebook page.  I received about 60 likes in the first half hour it was up.  One cannot deny the power of social media – I was amazed at how many people cared about me, even if I’d never met them or seen them in years.  I also noticed who I expected to express concern, but didn’t at this time.  

Interesting.

April 15: Smoke and Mirrors

I am quite enjoying being away from the noise of modern life.   Emails,  texting, the daily deleting of Fab promotional emails – all quiet.  Just ocean sounds and meditation, being fed and watching my cat sleep.  I did keep glancing at my phone, though.  The unanswered emails were in the 600’s by now but it didn’t really bother me.  And I didn’t dare peek because  I knew how it was with emails:  They’re like potato chips; you can’t just have one.  So I enjoyed the quiet.  My mind was a playful meadow of  chirping birds and fluttering butterflies and wondered if this was what retirement was like. It was sweet relief to have nothing to do after years of hustling business, but I wondered when I’d suddenly be overcome with boredom.  For the moment, though, it was enough to observe the changes taking place in my head.

The “tapping” stopped at some point, but my senses were still muffled, my body only feeling so much.  I had to be careful with Q-tips for example, as the deeper part of my ear canal was still numb and the pressure of the swab disappeared at a certain point.  And my sense of smell and taste were still compromised, and continued to be baffling.  I couldn’t smell my cat’s breath up close, but I could smell cleaning products from another room.  Was the brain really that specific as far as distance and types of smells?  Hmmm.

My tasting situation was sadly apparent when my mom had brought me fried lumpia (Filipino spring rolls) that weekend as I had told her I had a mad  craving for them.  How disappointed I was when the nostalgic joy I had sought in this simple dish didn’t happen.  I wished for the sublime chomp of fried spring roll wrapper, which would quickly surrender to tender fried vegetables tanged up with garlic vinegar.  Instead,  I got a mouthful of almost delicious.  Rather than a familiar friend saying howdy-do, I got a stranger on a bus that said nothing for the whole ride.   I sighed and ate two anyway, as I knew how much work had gone into them.

Each day brought me a little closer to being myself again.  A few times when I rested I felt a slight but unmistakable “tuning” taking place in my head, a palpable clicking like the twang of a stringed instrument being adjusted until it hit that magic 440 Hertz.  It was oddly comforting as it suggested that healing was taking place, or so I liked to think.  Eventually this too ceased like the obsessive tapping of my tongue against my teeth.

An interesting behavior change to note:  My mood was extremely happy.  I was very confident in myself, and feeling unstoppable. I was going to write a book, and maybe do a TED talk on my experience and heck, maybe I’d give Algebra another whirl (which was really a stretch as I hated all things mathematically inclined).  I felt I could handle all sorts of things now that the meningioma had been removed.  I wondered if it had kept me from my full potential, and resented it tremendously if that were the case.  But then how was I able to play complicated music and pull off multi-tasking and planning events?  Well, at least up until the last few weeks.  I had wondered why I had become anxious and seemed less inclined to take on the variety of things I normally did with no complaint.   I also recall starting to use both hands when applying things like face moisturizer and foundation.  I had used my right one all my life, but out of nowhere it seemed more efficient to use both.  I suspect it was an early symptom – my right hand was becoming weak and the left hand was answering the distress signal.

I also felt a oneness with everything and an understanding for all, as corny as that sounds.  My empathy skills seemed enhanced, and I wanted to help everyone.  In fact, I felt that was my true calling in life, this need to make everyone happy.  It was so unlike the “me” before brain surgery – I’d been moody and prone to depression most of my life, and lost most of the time.   And now, I had focus and was elated about everything, and believed in myself.  I truly hoped I would feel this great for the rest of my days.  It was wonderful to wake up feeling optimistic and joyful, and I thought wow, this is what it’s like to be happy.  

As a bonus, I noticed my speech  improving, and my cognitive skills.  I could now consistently form complete thoughts, actually visualizing from the left part of my head first before I spoke.  And I was not questioning my vocabulary anymore – I started using some fairly spectacular words without wondering if they were right (of course they were!).  Things were looking up and I was convinced I’d come out of my ordeal a better, smarter person.

I was so happy about everything I felt like telling my family I loved them for the first time, another completely uncharacteristic behavior. My husband fully supported me knowing it was a pretty big deal.  

But for all the build up, I was met with little response bordering on awkward silence.  My twin’s partner said something slightly sarcastic about someone in our family actually expressing their feelings, but that was about it.  I think my mother smiled but said nothing – not exactly how I had planned it in my head.  I had imagined her bursting into happy tears, then we’d all hug fiercely and have a Waltons’ moment. I was left a bit stunned once the door shut behind them, and assumed they were discussing my odd behavior once they were out of earshot.

Welp, as the kids say.  So much for that.

Since then, I have found out that this is a typical response from family and friends if you’ve never actually behaved in any overtly affectionate way before your brain surgery.  I like to believe that they just didn’t know how to respond.  Heck, I wouldn’t know how to respond if my twin said one day “You know what?  I’ve never said this before, but I’m glad you and I are twins.  I love you, sis’!” I’d probably just nod and go back to eating my Cheetos or something.  Ok, maybe not, but I get it.  

As for my euphoric state, there were several reasons for it.  Euphoria is side effect of both the medications I was on (Norco and Keppra), but when I reported this period of mental clarity and joy to my social worker, she told me that shortly after surviving a life threatening situation,  it has been observed that the brain basically has a party for a short period of time after realizing it has narrowly escaped long term trauma or worse.  War survivors and many that have had near-death experiences have experienced this.  Also, in reading Jill Bolte Taylor’s Stroke of Insight she states that damage to your left hemisphere results in your right hemisphere becoming more dominant, thus further explaining the state of bliss I was in. But to understand this concept better, I should offer more detail on how the right and left hemisphere work.  

As she states in her book, your right side takes in information with no organization whatsoever, which is its primary function. It exists in a state of Now. Huge amounts of information involving colors, sounds, sights, names, faces, events, etc. then travel through the corpus collosum, the connection between your lobes, via numerous neural fibers (approximately 200-250 million!) to the left hemisphere where they get sorted out and create an ongoing individual reality. So, with not so much supervision from the left,  I was a happier person because I existed in the present, having less concern over where bits of information needed to go and not diving into past memories for random reference and emotions. 

So how could I not feel invincible and confident, with all these things happening?  How could I not assume this was my new outlook on life forever and ever?  All an illusion, much to my disappointment about two weeks later.